That pit in my stomach
It was within minutes of her being born. First it was, “Oh, she’s just taking longer to pinken up, but don’t worry,” …. And then some other people came in, they were giving her oxygen and she still wasn’t, and they were like, “Oh, okay, just give it some more time and then I think we’re going to have these people look at her,” and then it was, “We’re going to take her down to the NICU.” But it was a full 24 hours before diagnosis. They actually brought in a different cardiologist who specialized in neonatal and that’s when he diagnosed her with cardiomyopathy … I just remember sitting there and feeling that pit in my stomach – you know how you get that with stress? You’re sitting there and you look really calm and no one would know, but you get really cold and you’re shaking.

So I remember that, and then trying to figure out, “What the heck is this?” And there was no information available, there was nothing online! It’s amazing to me in fourteen years, one, what the Internet does, and also, I think a lot of the cardiomyopathy doctors have just really pushed to get information available, and that has made a huge difference. Because at the time there was nothing: there were little blips in medical journals, that’s all that I could find. Mother of Eva, age 13

Mother of Eva, 13

 

We really didn’t think there was anything wrong
We found out Laura had health problems at her four-year-old well check. I had absolutely no idea there was anything wrong! Her pediatrician heard a click noise in her heart that he had not heard before, so he decided that we probably should see a cardiologist just to rule out anything major. He kind of assumed that she probably just would end up needing to take antibiotics before dental procedures, like a valve defect or something along those lines…It wasn’t sounding too serious at all. We went into see a cardiologist and her echocardiogram that they did revealed extremely high pressures in her pulmonary artery, and heart was twice the size it should be because it was overworked…It was kind of surreal, because here we had this regular normal four-year-old functioning child! We just didn’t really think that there was anything wrong, and the doctors that saw her were kind of cautiously preparing us for what was to come.

We went into see a cardiologist and her echocardiogram that they did echocardiogram that they did revealed extremely high pressures in her pulmonary artery, and heart was twice the size it should be because it was overworked…It was kind of surreal, because here we had this regular normal four-year-old functioning child! We just didn’t really think that there was anything wrong, and the doctors that saw her were kind of cautiously preparing us for what was to come.

[Later] They did a heart catheterization and they basically said, “You can’t go home, the pressures are too high. We can’t take care of her. Where do you want to go?” So we went from just kind of randomly getting a cardiologist evaluation to being life-threateningly sick in a blink of an eye.

Mother of Laura, 14

 

I was in shock
They diagnosed her heart problems when I was pregnant, through ultrasound: they couldn’t find her septum. I was in shock. My three other kids were perfectly healthy, everything was fine…my husband cried; I just kind of sat there, and was, like, in shock…

We went to local hospital initially. She had a cardiologist there who had her diagnosed, basically didn’t know if she’d even make it. Then we had the appointment at Children’s and I think they kind of had better news than the initial news: she still had the three major heart defects, but what the first doctor had diagnosed, basically the heart was inside out and upside down from their perspective. And then when we came here, she had a few things that were not in the right places but she was completely missing one ventricle, everything was running into the other ventricle – that’s why they couldn’t find the septum, because she didn’t have four chambers. But they did the pulmonary banding was the first surgery, and that was their major concern: she had so much blood flow to her lungs that she would have drowned.

Mother of Alanna, 15